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Hey everybody. I have been talking to and working with some other CFers and transplant patients at my transplant center in Jacksonville about what we can do to help make the situation faced by those on the transplant list better. With all of the news attention that organ donation has been...

I drink filtered water as well, but know that many patients tend to stick with the "Bottled water" only rule. I have also heard the no fresh fruits and veggies from other patients at my center, but when I asked my nurse and physicians they say wash them for a minimum of 2 minutes or something...

My first thought was gallstones as well, but it is possible that it could be pleurisy. I had my gallbladder removed about 8 years ago. I didn't have stabbing back pain or anything - BUT back pain on the right side below the shoulder is common with gallstones and gallbladder issues. I would get...

Have you asked about nebulizer treatments via mask. I have taken IV meds for sinus infections in the past - but it was only post transplant (I am 6 yrs post transplant now). Before my transplant I pretty much always had sinus issues. I have had 2 sinus surgeries in my 31 years. Personally I...

I have had IV "liquid" vancomycin before and I get red man's syndrome with that, but the red man's is alleviated with one of the following options: pre medicating with benadryl and infusing over the normal "recommended" time frame OR doubling the infusion time - so if recommended time is 2 hr...

I can't speak to what it is like to be in your position, but can say what it is like from the point of view of your girlfriend. I had my transplant about 5.5 yrs ago and am doing great considering. I was diagnosed with chronic rejection shortly before my 5 yr mark, but am stable and maintaining...

Most centers will recommend against them. I have found from experience that if you are really wanting something and ask your team the safest way to go about it they will help you figure it out. I personally don't have a tattoo, but want one in remembrance of my donor assuming I ever get...

I say don't sell your jet ski. I primarily go swimming at the beach, but have access to the beach since I live in FL. I also go swimming at my dad's pool when we visit. I have been in lakes jet skiing and tubing. I don't do much to put my head under water and am just cautious. I haven't had any...

I agree with you that our breathe training does help a lot. I actually couldn't do much pre transplant and asked the pulm rehab team what I could do to get off the vent as quickly as possible post transplant. They gave me breathing exercises to do and they helped a great deal. I was awake and...

It depends on center to center how far away they will let you live. As mentioned, you normally need to be able to get to the center within 4 hours of notification. Also you are usually required to stay in the city or near your center for 3-4 months post transplant and that is assuming that you...

I may be wrong on this but I believe that your husband could request special orders to be stationed at a base near a medical facility for you. I know that it was allowed for my father when he was enlisted and I was needing to be in a different climate and near a CF Center. He was in the Marine...

I had my first transplant about 5.5 years ago and was diagnosed with BOS earlier this year (shortly before my 5 yrs). I am not at a point where I need to be relisted for another transplant right now, but have gone from roughly 90% FEV1 to 50% FEV1 over the course of the Chronic Rejection this...

I don't have nay input as far as the loan itself, but I wanted to offer a word of caution in the event that you take the advice of if you can't pay you can't pay. I work at a credit union and have seen plenty of times where people end up with garnishments on their bank accounts because they do...

I agree with what the others have posted in most aspects. I did want to point out that not ALL centers do a clam shell incision though most do. My center prefers the bilateral thoracotomy incision (two incisions on your side/back) They do cut through muscle and it does make healing a little...

I was treated with Bactrim constantly as a maintenance drug regimen when I first found out I cultured MRSA (age 16) until I went to adults at 21. After that my doc took me off Bactrim and would only treat me with IV meds when I was sick and he normally alternated between Vancomycin and Zyvox for...

I was told no grapefruit, also a new one is pomegranate (in recent years) it interferes with medication (one of the transplant meds) absorption. I was told you could have cats but it was specified that I not mess with the litter box. I was also told to steer clear of birds and not to handle...

I just read through the replies and have to agree with Summer about the greatest compliment. I get the same compliment from people "If you hadn't told me I wouldn't have known." It is wonderful to hear. I will add, like Summer did, what I am able to do. I work part time and am going to school...

I have CF and have had a transplant. I never worked when I was on IVs before my transplant because I didn't have the energy too. Now Post Transplant I have been on IVs 2-3 times and yes I have worked each time. I ask my doctor any time I have a hospital stay if I need to be out of work. They...

Hi there, For your first question - I was diabetic pre transplant and remained so post transplant. I weighed about 108lbs when I was listed, 117lbs when I walked into the ER for my transplant and 105lbs when I left the hospital 12 days after my transplant. I gained the weight back after about...

Thank you for the clarification on that. I didn't know that because quite honestly I never really looked into narcolepsy at all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Lindsey